Assistance to families of children with Autism Spectrum Disorders: Perceptions of the multiprofessional team

Abstract Objective: to synthesize the care provided by health professionals, at different care levels, to the families of children with Autism Spectrum Disorders. Method: a qualitative study, based on the Family-Centered Care philosophical theoretical framework and developed with 22 professionals from three multidisciplinary teams from the Health Care Network of a municipality in the state of Mato Grosso do Sul, Brazil. The data were collected through two focus groups with each team, organized with the support of the Atlas.ti 8 Qualitative Data Analysis® software and submitted to Thematic Content Analysis. Results: the findings show actions centered on specific situations, especially on the demands and needs arising from the child’s care and atypical behavior. Influencing factors for family care, such as work overload and little professional experience, show the weakness of multiprofessional care and the invisibility of the family as a care unit. Conclusion: the need is highlighted to review functioning of the network for the multiprofessional care of children and their families and how such network is organized. It is recommended to offer permanent education actions that contribute to the qualification of multiprofessional teams in the care of families of children in the autism spectrum.


Introduction
The complexity of Autism Spectrum Disorder (ASD) and its manifestations in early childhood, such as communication impairment, social interaction and repetitive behaviors, generate specific care demands for families. Such demands require time, energy and almost exclusive dedication to the child and, sometimes, designation of a family member as the main caregiver, which leads to renouncing to different aspects of personal or professional life to provide the best care possible to the child (1) .
These families are subjected to parental stress due to financial problems, anxiety related to the child's future, lack of social support, the different implications imposed by the health condition on the group and the increase in care burden, especially in the mothers (2) .
Diverse evidence shows that social support, peer support and hope are strategies that help alleviate these families' distress (3)(4)(5) . These strategies have the potential to help them cope with the needs of children with ASD because they favor emotional support and information exchange, promote family well-being, contribute to strengthening family functioning, and relieve anxiety and collective stress. They also provide an optimistic perspective of the future in coping with the condition and in adapting in periods of crisis (3)(4)(5)(6) .
In Brazil, the Psychosocial Care Network (Rede de Atenção Psicossocial, RAPS) proposes guaranteeing access to and quality of the services, from the perspective of comprehensive and multiprofessional care, with a focus on territorial and community-based services, and with the social participation of users and family members.
As a Public Policy, the RAPS provides guidelines for the multiprofessional team to act under interdisciplinary logic and ensure inclusion of the family in care planning, aiming to provide articulation and integration of the services in the different points of the network (7) .
In addition to that, the National Policy for the Protection of the Rights of Persons with ASD, enacted in 2012, established that children with ASD and their families should have access to health services, diagnostic processes and multiprofessional care. It determines that actions are carried out that promote qualification and articulation of the professional actions and services to provide adequate health care to these children, ensuring comprehensive care in the scope of primary, secondary and tertiary care (8) .
However, the complexity and demands of care for children with ASD and their families require knowledge, skills and professional attitudes, as well as a qualified and integrated practice, in order to promote an approach centered on the needs experienced by this population segment (1,9) .
The national and international literature indicates occurrence of challenges and barriers for health professionals to initiate and maintain health care for this population group. Health professionals' lack of knowledge and unpreparedness to offer care actions to children with ASD and their families are factors related to this reality, which exerts impacts on care quality and delays access of children and their families to specialized health services (9)(10)(11) .
These challenges and barriers experienced by families of children with ASD are related to the assistance, support and care offered by health professionals (9)(10)12) .
They permeate different moments of the family path, such as the itinerary for diagnosis, the lack of information in the approach by the professionals and services, ineffective communication between health team and family, the family members' difficulties accessing services, and the lack of support after diagnosis (9)(10)(11)(12)(13) .
The aforementioned factors turn the search for informal support networks and family hope into a phenomenon experienced by the families, sometimes without participation of the health professionals (14) . Therefore, as access, care and therapies of these children and their families go through the health professionals belonging to the RAPS, it is necessary to know how they have promoted and guaranteed care to this population (8) .
Thus, the question is as follows: How have the families of children with ASD been assisted by health professionals in the different services of the health care network? Which care actions do the professionals direct to them? This study focuses on the need to explore and synthesize the perception of the multiprofessional team about the care they offer to the families of children with ASD at different health care levels.
The objective of this study was to synthesize the care provided by health professional, at the different care levels, to the families of children with ASD.

Study type
An exploratory and descriptive research study with a qualitative approach, based on the Family-Centered Care (FCC) philosophical theoretical framework, whose theoretical assumptions are as follows: dignity and respect, shared information, participation and collaboration (15) .

Data collection locus
The study was developed in three services of the

Selection criteria
Health professionals with a minimum experience of one month at the workplace were included. This minimum experience time was adopted because, in previous surveys conducted by the research group, turnover of professionals linked to primary and secondary care services was identified due to the organization of the work process of the services. However, during data collection, we identified that the participants' minimum time of professional activity was 4 months, with a maximum of 17 years.
Those who were on leave or vacation at the beginning of data collection (first focus group) were excluded, as there was a requirement to have taken part in the first group for the other meetings.

Participants
The study population was defined considering all health professionals belonging to the three health teams. Thus, the participants were all the health service professionals who met the selection criteria and agreed to take part after presenting the research and making the invitation.

Data collection
The focus group technique was used (16) for data collection. Two focus groups were held with each service.
The first aimed at collecting diverse information and a script prepared by the researchers was used for its conduction, with the following guiding questions: "Have you been caring for children with autism or a similar diagnosis?" and "Describe your experience in caring for these children and their families". Ancillary questions to deepen the data were also asked, such as the following:

Procedures for data collection
An individual meeting with each service manager to start data collection was held with the objective of presenting the study and requesting a first meeting with health professionals to make the research invitation to potential participants and scheduling the first focus group. This first meeting was held with the FHU team, in which 15 professionals took part, as well as with the CAPSi team, with the participation of nine professionals.
After the meeting with the responsible manager, at the UH it was requested that the invitation should be made by telephone to the nine professionals of the team who met the selection criteria.
Both focus groups in each service had been scheduled. The first focus group, in each of the services, was conducted by three researchers: the main researcher (MSc level), in the role of moderator, and two researchers with a PhD (observer and rapporteur); all with previous knowledge in qualitative studies, in the research theme and in conducting focus groups. Eight professionals took part in the GHU: seven in the CAPSi and eight in the UH.
The second group was conducted by two researchers, one with a PhD and the main researcher. The eight professionals who were included in the first group took part in the FHU. In the CAPSi, four of the seven participants in the first group took part, two did not participate due to work-related requirements on such day, and one for having been transferred to another service. In the UH, of the seven participants in the first group, five professionals took part in the second, and two were unable to attend due to demands of the service on that day.
In the first focus group, a questionnaire with the professionals' social and labor characteristics was applied in order to characterize the team. There was no pilot test for any instruments; however, they were prepared by the researchers based on previous studies of the group and diverse scientific evidence on the topic.
Both focus groups with each of all three services were held from April to November 2019, in person and in a private room offered by the service. They were recorded on digital audio media. In the FHU, the first focal group lasted 38' and the second, 33'. In the CAPSi, the first lasted 60' and the second, 56'. In the UH, they lasted 60' and 53', respectively. The research team had no prior working or teaching relationship with the study participants.

Data treatment and analysis
The first analysis was carried out in detail by the main researcher, and the narratives were transcribed in full and submitted to thematic content analysis (17) .
The following stages were performed: 1. Transcription of the interviews, 2. In-depth reading and identification of excerpts considered as indicators of ideas or concepts.
Deepening the narratives and capturing the idea, 3.

Results
A total of 22 health professionals participated in this study: three nurses, two physicians, five community health workers, two social workers, a dentist, two speech therapists, a physiotherapist, a mental health caregiver, three psychologists, an occupational therapist and a health service assistant. Two central topics emerged from the analysis of the narratives: "The professionals' practice in the care of families of children with ASD" and "Factors that influence care".

The professionals' practice in the care of families of children with ASD
In the health professionals' experience, the family of a child with ASD has needs related to the demands generated by care, as well as by changes in family dynamics and in the routine of its members.
In Primary Health Care (PHC), the professionals reported believing that the family needs to accept the ASD diagnosis and that psychological support would contribute to reduce denial. The use of matrix support to assist families in emergency cases was reported by secondary level professionals. However, the team reported difficulties carrying it out because the service covers the entire health territory of the municipality, which implies a delay in performing and weakened assistance. We need to do the matrix support to make the home visit, which is also a way to support the family or offer this help, which in their territory many things are missing. Sometimes  In secondary care, the public policies that support health care were identified as ineffective, making it difficult to care for the families. This situation exerts impacts on correct functioning of the HCN, weakens the services, access and follow-up by the population, and discourages the team. What discourages a little is maybe that we swim and die on the beach. Today the service has a significant demand and a reduced team, and at a certain moment we realize that it affects. To start to get frustrated and sick.

Discussion
The findings of this study allowed synthesizing that the health care practice by multiprofessional teams provided to the families of children with ASD is carried out through listening and welcoming, with guidelines according to the children's demands and the care provided to them. However, this practice is still centered on specific situations, mainly on the demands and needs arising from the children's care and atypical behavior.
Punctual and child-centered care indicates the weakness for including the family in the care process.
Therefore, planning and executing actions such as the STP are paths to be followed, as they enable the family to perceive their inclusion in the care provided and in the relationships established with the professionals as fundamental for the children to progress in the therapies (18) .
Use of the STP and matrix support by secondary care professionals was also considered as a family care mechanism by the participants; in addition to referrals to other professionals or special education specialists in the primary-and tertiary-level services. However, assistance cannot be limited to a routine of referrals to specialists and prescriptions and dispensing drugs in PHC (19) .
It should be noted that care limited to referrals is sometimes due to the professionals' difficulty understanding their role and the situation, as well as in bonding with the service users. A study carried out with professionals from a Family Health Strategy (FHS) unit showed that they can understand the users' mental health needs, although they have difficulties bonding with these individuals, in qualified listening, in elaborating care proposals and in maintaining their follow-up (20) .
Regarding the families' access difficulty reported by the PHC professionals and related to social isolation of the family or to its judgment, it is noted that this is sometimes due to discrimination attitudes by the health professionals themselves, which causes mutual distancing (20) . Unwelcoming stances, lack of guidelines, blaming the family and judging the family as a rival are attitudes that the professionals can assume due to lack of training (21)(22) .
T hi s s t anc e h i n d ers p ro fes s i o n al -fami l y communication, bonding and trust, and enhances negative experiences, resulting in low care demand from families (22) . Therefore, it is necessary that the health teams are sensitized and trained for care, as knowledge contributes to changing the subjects' perception, reducing the stigma related to mental disorders, as well as to greater involvement of the professional with the family's demands (20,23) .
The conversation circles, visits and guidelines were referred to by the participants as family care actions. for. In addition, these conditions impose consequences on the professionals, who describe feeling of devaluation, discouragement with the actions in the service, and repercussions for mental health (25) .
Regarding operation of the RAPS, elaboration of the STP and matrix support was highlighted as an important tool. However, high care demand and the territory covered hinder their execution. Therefore, actions are required to promote the implementation of matrix support, which contributes to articulation of the HCN, in the integration and co-responsibility between primary and secondary care. There is also a need to work with the conflicting relationships between the different services involved, which implies organizing the actions offered by them for good quality mental health care for the individual, the family and the community (26) .
In addition, the data showed the need to review the functioning of the care network for the care of children with ASD and their families and how it is organized, so as to favor not only the assistance provided o this population segment, but also to the family. Collaboration, interdisciplinary and intersectoral work, inclusion of the Family Health Support Center, and training of health professionals are strategies that can reduce the existing problems (18,27) .
A study on children's mental health in PHC also showed lack of knowledge and involvement of the professionals on this topic, making permanent and continuous education actions necessary, in order to improve qualification of the professionals for good quality mental health care for children and families (28) .
Thus, it is necessary that health professionals understand the family as a care unit and dedicate themselves to support, encourage and assist in the decision-making processes necessary for the well-being of children and family members. Implementation of FCC can help health services put into practice care that values the family and guarantees dignity and respect, appreciating history, beliefs and values (15) . Its use favors the user's perception on the quality of the care received and contributes to supporting the family during the diagnostic process experienced by the parents (11) .
However, there is still a gap in the professionals' theoretical knowledge about FCC that influences the care context and prevents them from progressing in their involvement with the family. In this sense, strategies that favor the use of theoretical models based on the systemic perspective of Family Nursing contribute for nurses to establish therapeutic conversations with the family (29)(30)(31) .  (29,32) .
It is suggested to carry out studies that address the perception of families of children with mental disorders in access to the RAPS services, as the PHC team considered social isolation of the family (due to the child's condition) as a factor that hinders access to them. This finding needs to be validated considering the family members' perception.

Conclusion
This study sought to explore and synthesize the health care provided by health professionals, at all three care levels, to the families of children with ASD, as well as the factors that influence this care. The professionals understand the families' experiences and needs. However, in primary and tertiary care, care is focused on the child's condition and the family is not recognized as a care unit.
In secondary care, organizational issues inherent to the service routine hinder more constant care of the family by the professionals.
Knowledge of the factors related to care allows for a reflection on the challenges in health care that has been offered and evidences the fragility of care and the invisibility of families of children with ASD. In addition, it shows that some practices can be modified to enable advances in care quality.
It is recommended that training and permanent education actions be offered, through knowledge transfer. This strategy will enable a qualified and prepared team to take care of these families, to understand them as a care unit and in their needs, and to articulate the RAPS services.